Insights From a Renaissance Guy and Polymath Who Has Stage IV Melanoma Cancer

Glowing Opportunities in Melanoma TIL Treatment September 16th, 2011

I write to you tonight from my private (for now) room at the National Cancer Institute (NCI) in Bethesda, Maryland. For those of you who follow this blog closely, you will understand that this means that when I signed the agreement to participate in the Melanoma TIL (Tumor Invading Lymphocytes) clinical trial here yesterday, I was randomized into the arm of the trial which adds Total Body Irradiation (TBI) to the base TIL treatment.

This is actually a good thing – even with the nasty side effects – because the use of TBI, based on anecdotal evidence, appears to contribute handily to improving the response to the TIL treatment. And, as it was confirmed this morning that the melanoma has now started to spread to my liver and my lungs (small tumors were spotted on the CT scan on Wednesday), I am pushing for every bit of help the TIL treatment can get in killing my melanoma. So TBI is most welcome as a part of my treatment.

The emblem of the surgical unit of the National Cancer Institute

A short while ago I received my first set of injections of a medication called G-CSF a.k.a. filgrastim a.k.a. Neupogen. The purpose of this medication is to stimulate the growth and release of stem cells into the bloodstream. The careful readers among you may notice that I referred to “injections” in the plural. As it turns out they can only inject a maximum of 2mL of filgrastim per injection site, and my dose is 2.8mL, so they split the dose in two, shot into opposite sides of my belly. I apparently will be getting two shots every 12 hours (at 7am and 7pm), instead of one larger one, for the next five days. Eek.

I guess I shouldn’t be surprised by having to be poked twice as often, as needles have been a big part of my week here in Bethesda. In counting the number of times I have been punctured in the last three days, I get to twelve. Only nine of those were successful. This includes the two belly injections tonight, two sets of drawn blood, three IVs, and two related to my leukapheresis. The puncture wounds on my arms alone make me look like a junky. But that should have changed with the small surgery I had this afternoon to install a double-lumen Hickman catheter (more on that later).

The feeder apheresis, also know as a leukapheresis, was pretty interesting. As described in my prior blog post, the idea was to remove blood flowing through one arm, filter it for the desired blood component, and put the remaining blood components back into my body in the other arm. And that’s pretty much how it worked yesterday morning. All in all, 15 liters of my blood (which is about 3-4 times my total blood volume) was run through the apheresis machine to produce almost a liter of mostly white blood cells. The process ran nearly four hours, and after the initial installations of the intake and outtake needles, was pretty painless.

My white blood cells after the leukapheresis

The filtering process is actually a centrifuge which forces the components of my blood into separate layers, one of which is the white blood cell layer. It’s next to the red blood cell layer, which is why the above bag of white blood cells is reddish in color. The white blood cells will be further separated out in a lab, and then fed to the TIL cells being grown for me, since those cells will appreciate a “homey” environment (namely from my body).

Next Wednesday morning, all the stem cells being released into my body will be collected via a stem cell apheresis, but this time I won’t need to be punctured again. That’s because this afternoon I had a dual-lumen (two port) Hickman catheter installed into my jugular vein.

Diagram of a dual-lumen Hickman catheter

The doctor installing the catheter indicated it was 23cm (almost 10 inches) long. It starts in the middle right part of my chest, loops up over my right clavicle, and down again into the vein. At the end of the catheter (the part inside my body) are two openings about 1.5 cm apart, at right angles from each other. The catheter itself has two independent channels (lumen), one connected to each of the openings.

On the end of the catheter sticking out of my body are two ports which can take IVs, but more importantly, can also be used for my stem cell apheresis so I don’t have to be poked again for that (or future apheresis or any IVs other than for CT or MRI contrast injections).

The catheter is pretty uncomfortable tonight – a little bit of pain, plus a feeling like I bruised my neck muscle, but the doctor (and the nurses here) said I would get used to it in a couple of days. Good thing, since I need to continue to keep it in for at least three months.

I also had a dietician come visit me today to discuss my dietary needs and restrictions once I start my actual treatment of chemotherapy followed by the radiation and IL-2. And, even more importantly, the months after treatment where I will be recovering from the effects of the radiation. About half-way through my treatment, I will achieve a point where I am “neutropenic” – having little or no white blood cells with which to fight off any infections or illness, and that will require being extremely careful about what foods I eat (and whose hands I shake).

However, even as my white blood cells come back after the reintroduction of my stem cells, I’ve been told that I will need to maintain a neutropenic diet for about three months after treatment to avoid complications. This cuts a lot of fun and interesting food out of consideration for consumption, so perhaps I should take solace in the fact that I won’t have much of an appetite, as well reduced taste sensation, during my recovery.

An overview of the “can and cannot eat” items in a neutropenic diet can be found here.

After I return back to Boston on Friday or Saturday, I can only count on being there for between five and twelve days, and I’m betting on the lower end of that range based on how fast things have gone at NCI. Then I’ll be back in Bethesda, starting my treatment, and hopefully moving my way through the final step towards NED – No Evidence of Disease!

31 Responses

I hope the dude on that patch isn’t going to stick that short sword into his own butt – that would not be good emblem in medicine. :–)

You do seem to be on the cusp of ‘today’ medicine! Prayer that it works!!

From a past exchange: I pointed you to Kipling’s SciFi because I understood you were a SciFi’er and because you are a busy person, then one way now another. The stories are ‘short stories’ so quickly read, diverting for someone needing diversion from today and readily available on the web at Kipling.org and Gutenberg for 2. Thought the SciFi stories would interest you since they are among the very first of the genre and the rest of his work is well acknowledged as among the best in the English language. Good stuff to further expand a Renaissance Guy and Polymath. :–)

You might start with his story ‘At the End of the Passage’ at or ‘The Mark of the Beast’ at . The background at is much drier but informative. I do suspect you might come to enjoy his work.

Good fortune with all that is happening!!!!

September 16th, 2011 at 23:46Barbara Leary Says:

Thanks for the update Jake, I’m glad to hear how quickly they do move, particularly in light of the apparent aggressiveness of your tumor. Those Hickman catheters really do make life a lot easier with so many blood draws and intravenous injections and are easy to manage for the patients.
Lots of hugs, looking forward to NED!

September 16th, 2011 at 23:49Glen Reem Says:

That is a ruddy unfriendly email link that won’t accept url’s that worked on a test email to myself (they followed the ‘at’s. Will find a way.

September 17th, 2011 at 00:03dara Says:

Jake, I am so sorry for the disappointing news about this blasted aggressive melanoma spreading; thank goodness you have the mighty NCI warriors of cancer surgery fighting by your side! Sheeesh, enough already!! I just keep thinking “thank God you were proactive and addressed things right away”. Glad to hear you had the catheter installed; getting poked gets old really fast! Thank you for keeping us updated and for your optimistic outlook and good humor. Moment-by-moment, take heart from the little triumphs and small miracles unfolding around you – what they are doing is really amazing!! Get on with this and get healthy so we can plan underwater epoxy adventure #2, or some other equally amusing escapade that will give us a good laugh. Hugs from chilly Minnesota! Dara

September 17th, 2011 at 08:45Jake Richter Says:

Dara,

Linda and I tried to figure out what could have been done differently and sooner, and couldn’t come up with anything other than what we have done. Each turn we have taken at the intersections occurring in treatment was the best one available at that time (otherwise I wouldn’t be in this incredible program here at NIH). I would even go so far as to suggest that if my cancer had not been spreading as rapidly as it has, I would be in worse shape from a treatment perspective. It needed to grow to allow me to participate in this revolutionary procedure here at NCI. And we’re definitely appreciating all the little triumphs and serendipitous things the tumult has produced, such as learning to enjoy and appreciate urban dwelling, and reconnecting with friends we haven’t seen in some time :-)

Things are really going fast, in positive direction, and also in neative direction. You really try everything posible to fight that Melanoma-beast, inside your own body. You are so brave! And so good you find the time to write about it, for all the people following your blog, probably a lot more then you think. On Bonaire everybody is talking about you.
Jake, fight, fight, stay positive, be a survivor, FIGHT against that melanoma-thing!
Forget about all the punctures, we know you are not a tsjoller. (or however you write that….) Be a survivor, thats what counts!

Good luck, the coming days and weeks.

Harrie & Carmelita

September 17th, 2011 at 01:03Glen Reem Says:

I’ll try here one other way – w/o the .

I hope the dude on that patch isn’t going to stick that short sword into his own butt – that would not be good emblem in medicine. :–)

You do seem to be on the cusp of ‘today’ medicine! Prayer that it works!!

From a past exchange: I pointed you to Kipling’s SciFi because I understood you were a SciFi’er and because you are a busy person, then one way now another. The stories are ‘short stories’ so quickly read, diverting for someone needing diversion from today and readily available on the web at Kipling.org and Gutenberg for 2. Thought the SciFi stories would interest you since they are among the very first of the genre and the rest of his work is well acknowledged as among the best in the English language. Good stuff to further expand a Renaissance Guy and Polymath. :–)

Glen – there are a lot of spam filtering mechanism built into WordPress (I have one blog in which over a hundred spams a day are posted as comments, and the spam filter gets all those). Your post got tagged as questionable because of the links, but I released it. I will check out the links. Thanks!

Jake

September 17th, 2011 at 03:55Dad Says:

Jake, I just read the diet rules. I am not sure if Schaller and Weber belong to delicatessen. However the Schweinhaxe is allowed, hooray! And how about sliwovits and Becherovka? Did you ask you dietician? Sliwovits here is considered to be a medication. See ya soon :-)

September 17th, 2011 at 08:39Jake Richter Says:

Dad,

Alcohol by nature does not contain bacteria, so I’m pretty sure it’s safe. Cold cuts, sadly, no, unless I heat them to 165F first (which would be a waste for most German-style cold cuts other than leberkaes.

Jake

September 17th, 2011 at 05:18hannah Says:

Well, on the diet side, you can eat breads from Eden Valley Bakers. I guess I’ll have to start doing mail order! And THEY are allowing “Twinkies”.

Here’s to NED!

hannah

September 17th, 2011 at 08:48Jake Richter Says:

Hannah,

I definitely would lie to try one of your breads (do you make a sour dough? :-) ) in the near future. Linda can get you an address to send it to once I’m back in for treatment. twinkles, no so sure about, unless they are fried (hoping to hit the Big E in a week).

Jake, you are amazing. I hope you packed your wings to wear during treatment. I think they look sexy ;–)

September 17th, 2011 at 08:55Jake Richter Says:

Janis,

The wings are rather large – haven’t quite figured out how to get them in luggage, but I think Linda’s trying to come up with some ideas :-)

Thank you for putting a big smile on my face today!

Jake

September 17th, 2011 at 08:14Steven Says:

We miss you in class, man. Hang in there.

September 17th, 2011 at 08:54Jake Richter Says:

I miss being in class too, Steven. Drop me an e-mail sometime and let me know how the semester is going for you so far and how the rest of your summer was!

Jake

September 17th, 2011 at 08:38Jean S. Says:

Hi Jake,
Thanks so much for the update… I am impressed with how fast you are progressing through the system of this state of the art treatment… and hope and pray that it makes a positive difference in the progress of the cancer. Your attitude is inspirational… taking one moment and day at a time, looking for the positives. Looking forward to a positive result!
Hugs, Jean

September 17th, 2011 at 09:26Karen Lear Says:

I find your treatment plan amazing and so glad that you have this program available for pursuing NED! Prayers and blessings going your way daily! And cheers to your amazing attitude in this journey!

September 17th, 2011 at 11:51Liz Says:

Jake….

TO NED!!!! You will find the port a welcome relief, considering all of the “sticks” you been getting! I too was on a neutropenic diet…just finished it (sorry it really sucks when you start feeling better, I cannot tell you how long I CRAVED salad!!!). Also after the radiation and chemo, you will find you have a whole new body, and some things that you used to love to eat, just don’t cut it. For example, I LOVED spicy foods BC (before cancer). During treatment I had a hypersensitivity to even black pepper! Now 3 months out, I’m beginning to try spicy foods, but it seems I have to build back my tolerance…
Wine and Beer also have a funny aftertaste, still, and at times can I can be hypersensitive to their tastes. My favs now are “hard liquor”, though I really was never a drinker, but now enjoy Rum and believe it or not, Bourbon, especially with diet root beer! Anyway my friend, my thoughts are with you, Linda and the kids, daily. There isn’t a day that doesn’t go by Ed and I are not thinking of you guys. Love and Hugs…

September 17th, 2011 at 20:19Jake Richter Says:

Liz – I don’t think you can possibly imagine how much your advice and experiences have been helping me deal with what is facing me in the future. Thank you (and Ed) for that! You have been so giving of yourself, and I hope that your current procedures go smoothly, and we can both raise glasses to NED before long (though mine may have water in it ;-) ).

Jake (Poseidon Cancer Warrior, PCW)…I’m just gonna say it, SHIT. OK, I feel better now that I got that off my chest…

I appreciate the time you take in documenting your battle, as doing what I do for a living I am learning a lot as well.

I’m gonna send some kick ass vibes to TIL treatment so it take that sword Glen referred to and chop the melanoma and metastatic cancer to shreds (I’ve created a nice visual for myself to use when sending vibes).

I know laying in the hospital getting these treatments can be boring, is there anything any of us can send you? Music? books? ebooks? humorous websites? Dumb links? Care package? Just say what you want or need and we will make it so my friend.

So, kick this cancers booty so we can sit on your rooftop on Bonaire, toast to NED, and roast that 60 pound pig :-)

Sending love, hugs, all I can muster for a successful treatment Jake.

All my love and black ribbons…

Cynde

September 17th, 2011 at 20:16Jake Richter Says:

Hi Cynde!

I agree with Tish – nice visuals! As far as stuff I need – right now not much. I have my days free through Tuesday (between shots). Spent today at the National Archives and the Newseum (and eating things at a couple of restaurants I would not likely get to enjoy for many months once treatment starts :-) ).

Once treatment starts, Linda will be my guardian angel and keeper – might be good to check with her in a month or so. She’ll be a better judge at that point than I of what might be good for me. My expectations of my abilities at that time are low – I expect to be a drooling mass of Jake, protesting efforts to feed me and whining about being really tired :-)

Looking forward to that roast pig at my house on Bonaire sometime next Spring, though!

Love and hugs,

Jake

September 17th, 2011 at 14:53Scott Says:

Jake :-)

Thanks for the update…Was wondering how you were doing…my thoughts and prayers to you…keep fighting my friend…

Much love,
Scott

September 17th, 2011 at 15:33Tish Says:

Love Cynde’s image of the sword shredding the cancer. I would protest the prohibition of chillis in your cheese, but Liz suggests you won’t want them anyway. The prohibitions make sense though, don’t they, and hey, you can eat ice cream and cheese, the staples in any wise person’s diet. Hope the catheter grows comfortable soon. Awesome treatment program you’re in. Nothing but the best for you, Jake! To NED!
Hugs and love,
Tish

when the dietary constraints are over, we are off on another Beantown dining adventure, ok?

September 17th, 2011 at 20:17Jake Richter Says:

Definitely, Ann.

Scott – thanks :-) My best to you and your wife (whom I am looking forward to meeting before long!).

Jake

September 18th, 2011 at 18:40Tracy Griffin Says:

To NED! It is astonishing how fast things are moving – in your body and at NCI. We wish you the very best in your treatment and hope this cutting edge technology blasts your melanoma! Not sure if your schedule will allow a visit before you leave again for MD, I will email you re: same. We love you and miss you and can’t wait to hear you are free of this monstrosity!!
Tracy & Mike

September 18th, 2011 at 22:38Mercy Says:

I’m sending MY sexy angel to watch over you Jake. She’s a bitch, but she gets things done!!

September 19th, 2011 at 18:42Pam Says:

Hi Jake! My husband Joe is also a Melanoma patient at NIH and just recently finished the TIL trial with the TBI arm. We are heading back to Bethesda tomorrow for his 2 month scans on Wednesday and Clinic on Thursday. If you have any questions that my husband or I can answer for you we would be glad to. We heard from a lady who had the same protocol 5 years ago and is now NED. That is what kept my husband focused and able to push forward on those rough days. It is a tough treatment but you will get through it just like Joe did. The team of Doctors and the nursing staff are top notch. You will be in good hands there! You have my email if you want to get a hold of us!

Pam

September 19th, 2011 at 20:03Jake Richter Says:

Pam,

Thank you! You have e-mail :-)

Jake

December 11th, 2011 at 00:22Sue Newton Says:

Hi Jake, It is absolutely awesome to talk to someone who can explain exactly what you are going thru. Today is December 10 and I have just gotten back from having my tumor removed for making TIL cells at NIH. We’re waiting for them to grow, Christmas is almost upon us and I will start the new year there if all goes well. I, too, am wondering if I will be in the TBI group…I have mixed emotions on which way I want it to go. I am best putting it in God’s hands as He knows what’s best for me. You have obviously written all of this in September and I am wondering how you did thru it all and how you are doing now. I know everyone’s experience is different, but I am truly positive yet petrified at the same time. I am 57 years old and still have alot to live for including my 3 terrific children and 4 grandchildren. I would absolutely LOVE to hear from you! Thanks so much! Best of health to you! Sue

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About

This blog started as a place to explore the pursuit of parallel, varied interests in the vein of a Renaissance person in light of society's demand for specialization, but my diagnosis of cancer - malignant melanoma - in March 2011, has changed all that.

For now, this blog will deal with an exploration of how cancer affects one's life and perspectives, as well as share the voyage through diagnosis and treatment, hopefully with a positive outcome somewhere down the road.